Arthur Kleinman on caregiving

This post was contributed by Matt Dalstrom (UW-Milwaukee)

In an event co-sponsored by the UW-Milwaukee Center for 21st Century Studies and the UW-Milwaukee Research Workshop on Science, Medicine, and Society, Dr. Arthur Kleinman presented two essays recently published in The Lancet titled, “Caregiving: the odyssey of becoming more human” and “Catastrophe and caregiving: the failure of medicine as an art.” Following his presentation, Dr. Kalman Applbaum (UWM) and Dr. Claire Wendland, MD (UW-Madison) commented on his essays by highlighting the importance of caregiving in the medical setting and the need to address the bureaucratic nature of the U.S. medical system.

Dr. Kleinman entered the field of medical anthropology roughly four decades ago and since has striven to add theoretical rigor to a discipline, which historically had an applied focus. During his introduction he explained that he was first inspired by the work of William James on radical empiricism which led him to realize the need for both theoretical and ethnographic approaches to study illness experiences and define them. Contributing to the field through his vast number of students and research on meaning, social suffering, and local moral worlds, he has sought to expand our knowledge of illness, care, and the precarious nature of life. According to him, these two essays reflect both the depth of his research and also a response to “when life caught up to [him]” and his wife and longtime collaborator, Joan Kleinman, was diagnosed with Alzheimer’s. The experience shifted his role from researcher to participant and through it he explained that his personal engagements as a family caregiver deepened his understanding of what care and illness is about, prompting him share his reflections on the importance of caregiving.

In response, Dr. Applbaum commented that Dr. Kleinman’s work is particularly relevant since the health care experience has become increasingly impersonal with the growth of bureaucracy/technology within the health care system. As a counterpoint to that narrative, Dr. Applbaum suggested that the quality of care does not always reside within the realm of technology, but can arise out of the relationships between caregivers and patients. To emphasize the need for caregiving in the health care setting, he introduced the work of Atul Gawande (2010). In a New Yorker article entitled, “Letting Go,” Gawande explores the challenges of replacing curative treatments with hospice care. Within our society, highly technological and diagnostic medicine has altered our understandings of health care, especially death, as only occurring after a long medical battle with a disease. This type of care, known as futile care, is given when there is little or no hope left for the patient, but is considered the ethic of trying. However, as Gawande points out, radical treatments frequently decrease the quality of life while rarely extending it. Hospice care, on the other hand, with its focus on caregiving can improve the end of the patient’s life, help the family cope with death, and has not been shown to decrease survival times for breast cancer, prostate cancer, and colon cancer patients.  Furthermore, hospice care has been shown to slightly extend the lives of patients suffering from pancreatic cancer, lung cancer, and congestive heart failure. This data suggests that hospice care is not giving up, but is a substitution of one type of health care for another. The importance of caregiving cannot be understated and requires further research that explores its impact through an interpretative perspective which take into account the dimensions of patient experiences and also the institutional and cultural obstacles to caregiving.

Expanding upon Dr. Applbaum’s comments, Dr. Claire Wendland, explained that understanding the failure of medicine cannot be accomplished by separating technology and art because that division does not leave room to ask difficult questions. Dr. Wendland argued that bureaucracy is the central issue and as the level of bureaucracy expands, it impinges on patient care because an overly bureaucratic medical system works best if there is standardization. Thus, our current medical system is perpetually moving towards the production of both interchangeable patients and practitioners. Within this model, the knowledge of medicine supersedes the patient’s knowledge or personal experiences. As a counterpoint, Dr. Wendland suggests that we look at where bureaucratic medicine does not work, the cracks where the U.S. medical model does not reach, where biomedical knowledge is not as important as the knowledge of the patient and their lives. In these places where doctors do not have access to highly technological care, they have to rely largely on the patient’s experience to treat them. It is through examining the limits of medicine that she suggests we look towards for a model of health care that utilizes caregiving. Furthermore, as a strategy, focusing on the margins can help breach the gulf between knowledge and practice, where physicians and researchers can learn the value of personal relationships and how to cultivate them within the medical setting.

Dr. Kleinman responded that he did not write these essays for medical anthropologists, but for the medical community. As he said, his role as researcher is to engage the medical community to encourage them to change by employing strategies of interference. There are several methods that can be used to critique biomedicine, the most popular of which is complaint. But by complaining, the discussion can be only taken so far and eventually it alienates the audience. However, a second possible strategy is to intervene in the practice of medicine. Dr. Kleinman suggested that this can be accomplished by developing and running public health programs or by intervening through what James C. Scott has called “weapons of the weak.” According to Dr. Kleinman, when you see resistance as foot dragging in a strategic sense, then it is possible to see a variety of new interventions that can either improve or worsen a situation. One such approach is to expose health care providers to the medical humanities through lectures and articles addressed to them. As a strategy, it challenges the dominance of economics/bureaucracy within the medical field and provides a counter-narrative for understanding patient care.

Returning to his essays, Dr. Kleinman suggested that they are strategies of interference which are meant to confront what he sees as inadequacies within the medical field. While his work has generally been well received by the medical community, many practicing physicians tell him, “I am a cardiologist in X, I run a group, I graduated from X-medical school where we were trained in caregiving, but we do not do it in our practice because of the political economy and structure of medical care.” In these responses the idea of caregiving is acknowledged, but the structure of the system resists it. It is at this point, when the discussion has begun in a constructive way, that medical anthropology can further engage by developing theories, research projects, teaching tools, and eventually interventions to improve patient care. However, as researchers we must be careful of what we attempt to change, because there are often unintended consequences to our actions. For example, a provision in the new health care legislation is aimed at reducing the usage of intensive cardiology care in certain hospitals by Medicare and Medicaid patients. The legislation has been praised for reducing costs, invasive medical procedures, and promoting caregiving. However, while the legislation will decrease cardiac procedures, it will also create a two-tiered medical system where the wealthy will still have access to expensive medical care while those on Medicare and Medicaid will have limited access.

Dr. Kleinman concluded his remarks by emphasizing that the strategies of intervention have to be smart and targeted. Medical anthropology is particularly posed to meet these demands through the development of a toolbox of mid-range theories that have real applications within the medical field. As he sees it, the field currently lacks a clear theoretical focus on power and the study of professions. He argued that we need a critical approach to political economy that takes into account the impact of structural violence on one hand and the industrial complex or the driving force of medical care on the other. Furthermore, we need to incorporate a very strong study of the profession of medicine by focusing on how knowledge is created and navigated.  In addition as Dr. Kleinman sees it, the value of medical anthropology is its ability to develop these theories based upon ethnography, which in turn can be used as a tool for research/teaching and then as a basis for intervention.

Further resources:

• Arthur Kleinman’s faculty webpage at Harvard University’s Department of Anthropology.
• Arthur Kleinman. “Catastrophe and caregiving: the failure of medicine as an art.” The Lancet, 371, January 5, 2008: 22-23.
• Arthur Kleinman. “Caregiving: the odyssey of becoming more human.”  The Lancet, 373, January 24, 2009: 292-3.
• “Caring for caring: Conference investigates humanistic, technical dimensions of care giving,” Harvard Gazette, Dec 8. 2010. A report on a recent conference on caregiving held at Harvard that Arthur Kleinman took part in.
• “Arthur Kleinman on caregiving.” Kleinman speaks to Bob Abernethy of PBS’s Religion and Ethics Newsweekly about his experiences as primary caregiver for his wife Joan Kleinman.

Matt Dalstrom earned his PhD in cultural anthropology from the University of Wisconsin-Milwaukee. Currently he is a Visiting Assistant Professor of Comparative Ethnic Studies at UWM. His research focuses on medical tourism in Mexico and the creation of globalized medical consumers.